Change the world. Advocate for more awareness and support for ACHD

If you are living with ACHD, it’s important to be an active advocate for greater awareness and support for ACHD funding, surveillance, programs and policies.

You can advocate in your own area or at the Federal level. We need to make sure our voices are heard and our messages have impact. Our community is over two and a half million strong today, and growing.

Raising awareness of ACHD is a critical goal. Despite its high prevalence and high costs, many people, including those making policy and funding decisions know very little about CHD and its impact. Here are some key facts:

Every 15 minutes a child is born in the United States with a heart defect or structural abnormality

CHD affects one in every 100 births, over 40,000 babies every year

CHD is a leading cause of infant death, but

Advances in diagnosis and treatment are increasing life expectancy and improving quality of life for many people with CHD

CHD requires lifelong care from qualified specialists

In the United States, hospitalization costs for people with CHDs is $1.4 billion dollars a year.

Our primary advocacy goals are:

Continue support for CHD specific research and surveillance. The 2010 Affordable Care Act authorized the Centers for Disease Control (CDC) and the National Institutes of Health (NIH) to address the burden of CHD through the Congenital Heart Futures Act. We need additional funding and resources to continue and expand these efforts. These include rigorous epidemiological and longitudinal public health studies on the issues that children and adults with CHD face so we can better understand CHD at every age, improve outcomes and reduce costs

Increase funding for CHD research conducted by the CDC to $10 million in FY2017. This money will be applied to a number of initiatives that will improve understanding of the prevalence, healthcare utilization, short and long-term physical and psychosocial outcomes of CHD. The work will build on the pilot congenital heart adolescent and adult surveillance program and incorporate public health research, developing a longitudinal cohort and completing a survivorship study

Allocate $34.6 billion in the 2017 budget to the NIH to support multi-centered research opportunities focused on developing evidence based treatment strategies across the lifespan

Increase Congressional participation in the Congenital Heart Caucus in the House of Representatives